🔗 Share this article

It began on a dreary weekday in the morning in the autumn of 2016. I worked as a teacher, trying to settle a new class, when a intense pain bloomed behind my one eye. Then came quick shocks, reminiscent of electric shocks. As the school day came and went, the discomfort eased and then came back with increased intensity. Multiple times that day I left a colleague with worksheets and hurried to the staff bathroom to douse my face with cool water. I took aspirin, but the agony remained unbearable.

The attacks returned repeatedly that fall, and again in spring, soon establishing an annual pattern. September and October were the most severe, then February and March. I could anticipate the pattern: aura in the shower, early twinges on the train, full-blown agony in class by 9.30am. In late 2019, a doctor finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with intense discomfort around a single eye that persists up to three hours.

About 1 in 1000 people suffer by the disorder, and men are more frequently affected. Attacks usually begin with sudden, excruciating pain focused on a single eye that peaks within minutes and lasts for up to three hours. Episodes come in clusters, daily or multiple times a day, and are accompanied by red or watery eyes, sagging eyelids or facial perspiration. There exists the episodic form, which arrives in seasonal bouts; others have continuous cluster headaches, defined by the lack of long symptom-free periods.

What connects sufferers is the intensity. One study scored the sensation at 9.7 out of 10, higher than broken bones or pancreatitis. A separate discovered 64% of cluster headache patients experienced thoughts of self-harm amid bouts; the number dropped to 4% when they were pain-free.

Val Hobbs, in her seventies, a long-term patient from Pembrokeshire, isn't surprised. Her attacks began when she was a toddler. “I would hurl myself on the ground and hit my head. That was put down to being a difficult child,” she says. Her symptoms worsened through childhood. Alcohol in her teens, similar to many triggers, made things more intense. After having sherry at her graduation party, she recalls barely being able to see on the bus home.

Her family often mistook her episodes as drunken behavior. Support finally came from her parent and then from her partner, Rod. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her condition. She was fired from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a specialist hospital.

Nevertheless, the failure to organize life around unpredictable attacks took its toll. She especially hated being unable to plan social events, being seen as unreliable as a co-worker, and even having to be looked after by her family during the paralysis caused by the most severe episodes. “It robs you of the simple freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an attack inside a facility.

---

Headaches have been documented throughout the ages. “The first account of headache originates from the ancient civilizations in 4000BC,” write authors in a book on the topic. They attributed the disease to an evil spirit who afflicted his sufferers' heads.

Historical medical records propose bizarre remedies for what some observers would describe as a migraine. In the medieval times, migraine was recognised as a distinct condition, with therapies ranging from herbal concoctions to other, more superstitious cures.

It was a European physician who provided the initial comprehensive description of a cluster-type attack. In his writings, he speaks of a patient “afflicted with a very intense headache happening and vanishing each day at specific hours”.

The disorder were only officially recognised by global headache societies in 1988. From the mid-20th century to the late 1990s, they were thought to be caused by a issue with a key blood vessel that delivers blood to the head. Leading specialists in diagnosing the disorder explain this.

In the late 1990s, researchers released the results of a research project for which they had induced attacks in patients and observed the episodes in a brain scanner. The results, featured in a major medical publication, showed increased activity of the hypothalamus, which is responsible for human circadian rhythm, when patients were in pain, and a deactivation when they recovered.

Despite such advances, diagnosis remains delayed. One man's attacks started in 1986 and felt like “a balloon being blown up behind my left eye”. GPs thought he had sinus problems; he had four operations before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Specialists say delays in diagnosing and treatment happen because patients are seldom seen during an episode. “You're tired and low, but not in agony,” one says. He works by ruling out other primary headache conditions, such as tension-type headache, before confirming cluster headaches. A thorough history is crucial: on which part of the head do symptoms occur? For how long? What season? Are there precipitating factors, such as alcohol? Certain characteristics such as redness, sagging eyelids and stuffy nose help verify cluster headaches. Once identified, patients may be referred to specialist centers. But a lot of first go to A&E or are given unsuitable treatments.

A charity trustee, in her late seventies, has experienced cluster headaches for most of her life, although she hasn't had an episode since 2016. When she was in her 20s, she had her teeth extracted because dentists misunderstood her symptoms. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was Chapman who replied. I remember calling a helpline during an attack in 2021; a calm advisor guided me through oxygen therapy and drugs until the episode eased.

National guidelines on management advise that sufferers are offered high-flow oxygen therapy and/or a anti-migraine drug administered by injection. No tablets or strong analgesics should be used. Prophylactic choices include a blood pressure medication, which apparently helps manage the attacks of well-known people.

But consultant neurologists believe the guidance need updating to reflect a more defined clinical process and help GPs avoid misprescribing. For episodic patients, timing is everything: “The duration of the bout determines the approach.” Brief bouts with occasional episodes are managed with acute treatment only. Longer or more intense periods require preventives such as certain drugs, sometimes combined with steroids. A significant number of patients also receive a greater occipital nerve block during a cycle – an procedure into the area of the head where the discomfort is that decreases nerve activity.

The national guidelines need revising to reflect a